Caregivers are relied upon daily to provide safety, comfort, and support for another person that is unable to do for themselves. The person in need of care may be elderly, frail, with dementia unable to meet their own daily needs, or a younger person with a debilitating disease, in a wheelchair and needing help with all ADLs. ADL stands for “activities of daily living” and is used by all medical professionals when referring to someone’s abilities. “Can they perform their ADLs?” is a question answered for all patients before discharging home.
The level of caregiving varies with the different situations, diagnoses, ages (of both parties), and abilities. Some caregivers are paid to provide care, and others do it out of (so many examples) love, responsibility, relationship, guilt, greed, ability, and convenience as in “you live closest and don’t have to work, so you are the best caregiver.” I have seen many scenarios in caregiving, and I am sure there are more than what I have listed. The best situation is a loved one who is willing and able to care for the person in need and is utilizing support systems to make the caretaking job sustainable.
Take care of yourself
Without outside resources helping to manage, full-time caregiving becomes a burden few can tolerate for any length of time. Caregiver burnout happens even with additional help, the stress can be overwhelming at times. The caregiver needs time away, time to themselves, and a chance to recharge. A routinely scheduled reprieve must be available for caregivers to maintain their own mental, physical, and emotional health.
There are many resources available if you know where to look, and what to look for. Respite care is caretaking for the disabled individual specifically for the caregiver to have a break. There are programs in senior centers that offer respite care, social workers are a wealth of information on resources available for caregivers. Friends and neighbors can be respite help, in certain circumstances. Other family members helping with care makes the job easier but is not an option for everyone. Shopping online, for groceries and necessities has blossomed since 2020 making the life of a caregiver much easier. Sometimes just getting out to shop is a dilemma, requiring ongoing planning to keep food and essentials available in the home.
When to consider home care assistance
If the caretaking scenario is an elderly couple, the ableist providing care for the disabled, home care assistance is often needed for bathing, housework, grocery shopping, and other chores, Sadly, many elderly couples don’t receive the needed support. It takes a village not only to raise a child but to care for our aging community members. Without good neighbors, responsible children, or assistance to find available resources, elderly couples often find hospitalization and transfer to long-term care facilities their best option. With any health crisis, the best support won’t keep that scenario from happening, when the couple is both frail and safety is the main concern.
Caring for a disabled child
Parents providing care to a disabled child brings an array of mixed emotions. The joy of raising a child with special needs, whom you know is thriving to the best of their ability, in the safety and sanctuary of your loving home is the best feeling a parent can have. The challenges of ongoing care with continual responsibility and life sacrifices are a constant for this parent, and support is needed on many fronts. When raising other children there can be guilt about the inability to spend time, energy, and resources equally between the children. Worries about lifetime care for a disabled child can be stressful, expressing this concern and working toward a plan, for the time when the parent is no longer able to care for the adult child is necessary and helps to alleviate this stress.
When is caregiving at home, not the best care?
We all want our loved ones to be able to live in a home setting, keeping the family together, despite the difficulties. When one family member requires full-time care, often other members will try to work out a way for this to happen. The level of care needed determines the safety and ability of this to work. Health coverage is a major factor, can health aides be hired to provide and assist the family with long-term care at home? Often, this is the deciding factor: who is going to provide the care, and will it be safe and effective? Worst case scenario: families try to tackle caregiving at home in an unsafe environment due to a lack of knowledge, resources, and ability. Best intentions are not enough when a complex diagnosis disables a beloved family member. Sometimes the best care is professionally provided in a specialized setting, and: this fact can be the hardest of all to acknowledge.
I speak from experience. I have a mentally ill mother who has required 24-hour care for all my adult life. I am a nurse and have worked as a staff RN in a local hospital for 30 years. I am well trained in psychiatric care, most of it from personal experience. Mentally ill people don’t have an obvious disability, unless they are off medication, have been on long-term anti-psychotics and exhibit tardive dyskinesia, or are actively psychotic. When appearing and functioning “normal” the mentally ill person seems capable. That is the problem. My mother looked fine, mostly talked, and acted fine (some of the time) but was out of touch with reality and not safe to live on her own. As she has aged, her capabilities have lessened, the tardive dyskinesia evident in her lip smacking and shuffling walk, and her psychosis more pronounced because medications do not work forever, new drugs must be trialed and assessed for effectiveness. I will always be my mother’s caregiver, and my heart will always ache because I spent my life as a caregiver, caring for everyone else, when my mom had to live elsewhere. It has always been the best place that I can find for her, but it’s not my home. I could not give her the care that she needed on my own, despite my profession. I know that we did what was best for our family and my mother, but it hurts, nonetheless.
The best choice is often the hardest. What may work for many years at some point, will stop working, health conditions change, and the caregiver’s heart stretches to capacity. Giving our best is what matters, providing the needed support and safe, sustainable care for our loved ones is what caregiving is all about.